Tuesday, June 14, 2011

My son has autism. He’s 22 years old…which obviously means I was a baby when I had him. In many ways, I was a baby when he was born…blissfully naive and pointedly focused on nothing more complicated than play dates and diapers; preschools and summer camp. Never in my wildest dreams did I think the lion’s share of my adult life would subsist focusing on meltdowns, medications, behavior modification and an endless stream of doctors and therapists.

My son is considered to be high-functioning…he’s verbal, sweet and oh-so-childlike…with his own unique perception of his world. He moved six months ago into a group home, needing more daily supervision than I could possibly provide. He couldn’t spend his days cooped up alone whilst the rest of us ran out the door each morning to live our busy lives.

I'm ashamed to admit that I was relieved in a way...this was to be my opportunity to experience "normal". I could finally search for full time work and know that my son was with people who could handle the unique challenges that come with this often-misunderstood disability.

It was the third week in April when I got the first call. I was walking through the parking lot of a local office supply store at around 6pm, tired from a long workday and anxious to get home. The social worker on the phone informed me in a voice lacking emotion that my son was returning home from a social-skills group when he flew into an unexpected rage. They weren’t sure what set him off but staff had been forced to perform a maneuver that left him pinned to the ground, bruised and bloodied. They’d then called for an ambulance and had probably just reached the hospital, where my son would be confined to a bed in the psychiatric wing of the ER until he could be “evaluated” by the psychiatrist on staff.

Evaluated? For what?? He. Has. Autism.

As I stood at the trunk of my car, the bags containing my recent purchases all but forgotten at my feet, I tried to speak but it was difficult to form thoughts, much less words. I felt the ache in my throat and that familiar burning in my eyes…soon the tears would come. Before I could respond, the social worker added, “Oh and before they were able to subdue him, your son deliberately punched a staff member in the jaw and may have broken it. Our staff member is going to the hospital and plans on pressing charges.”

The next few moments went by in a haze. I remember vomiting…and frantically scraping my hand on the rough concrete of the parking lot as I grabbed for my dropped cell phone…and I remember having the crazy thought that I would bear a fitting scrape of my own to mark this horrific day. I was gagging and sobbing when I brought the phone back to my ear. My son had flailed out before when overwhelmed…but had never intentionally hurt someone.

“Is he going to jail? What hospital? Oh, God,” I sobbed. The social worker went on to explain that charges would eventually be dropped, as my son would be deemed unable to understand the charges against him. “Then why would someone press charges against him? I don’t understand this!” The tears coursed unchecked as I threw my bags into the car and took off for the hospital.

The confusion increased upon reaching the ER where my son, who simply lacks the emotional sophistication to lie, was horrified to learn that I’d been told he’d struck and injured someone. To this day, he swears it didn’t happen…and I believe him. Two more harrowing incidents took place in the weeks that followed…both involving trips to the ER for “evaluation”. Each “evaluation” involved a harried hospital psychiatrist’s drive-by assessment after less than five minutes of actual face-time with my son...akin to reviewing a movie when all you’ve seen is the poster in the lobby of the theatre.

I can’t sleep…my thoughts race. What do I do? He can’t be here alone; I need to work…I can’t lose this job. I have to help him! My baby…my sweet boy…the rest of my life…this will be the rest of my life. Guilt overwhelms me…it’s not about me…it’s about him! I weep…and I have never felt so alone.

When someone is physically ill, people will say, “How is he doing?” That doesn’t happen with autism. People don’t know what to say. I get that.

I turn in imaginary circles…trying to find answers to a question that has tortured me for 20 years: Can anyone help my son? Medicines…side-effects…therapies…doctors, doctor, doctors. No-one seems to understand my overwhelming desire to come home from work, dive into bed and pull the covers over my head. I should be working…should be writing…should be on the phone every spare minute looking for answers…yet I glance longingly at my bed and learn to live with the familiar burning of fresh tears yet unshed.

“Normal” eludes me…nightmares consume me. The sound of a phone ringing fills me with dread. Autism is forever…it forever changes those who must live with it and it doesn’t care if you’re tired or frightened or feeling alone.

I know I’ll keep trying to help my son…will undoubtedly advocate for him till the day I die. For right now though, I’m so very weary. Tomorrow is another day…it’s bright with possibilities and that fills me with hope.

I'm so sorry about what happened with your son. You must feel so alone and so powerless. Autism is so hard to deal with. It must've been very hard for you to make the decision to put him in a group home, and then to get a phone call like that is harrowing. I hope you have people you can lean on during this time. Don't be so hard on yourself. Loving a son who is unable to always function in a way that society deems acceptable is tough! My cousin's son has autism and he just sees the world differently and the reactions that he has seem appropriate to him. How can you fault someone for that?

Give yourself a break and pull the covers over your head for a bit, but then try to recharge by being good to yourself.

I really hope for the best for you and your son.

Hang in there. You are one tough lady and I know you will get through this!

Oh Kathryn. I didn't know. I'm so sorry for everything you're going through. I totally understand the lure of the bed and the need for a job and strength, not to mention the frustration with the so-called professionals. Hang in there, OK? And know that, while we're not there in real life, while you're sick to death with life's curve balls, that we're with you in spirit and thinking of you and hoping the best for you.Hugs.

Sweetie - I'm so sorry you are feeling so weary and overwhelmed. I have no words that could possibly make things any better so just know that I will be praying for you.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." ~ Jesus in Matthew 11:28-30

I'm a long time reader, but since I read From the Inside...Out in my RSS feed, I don't think I've ever even visited the site. I wanted to leave you a note today though, to remind you that you're not alone. I think you're funny and sweet and you sound like a great mom. I hope you and your family find all the resources and help you need so that you can feel normal - it's definitely possible, even with Autism. Hang in there!!Alyssa

I can't imagine how you feel, but I can understand the desire to hide away under the covers and wish it would all magically fix itself. I think that's something we all feel at one time or another. I'll be praying that an answer comes your way and a better situation can be found for your son. Hang in there, Kathryn.

Kathryn...I know how hard this is for you and how hopeless it all must seem at times. My son was diagnosed with A.D.D. in kindergarten and I spent his entire school years fighting the powers that be at his school that felt he should be put into classes with children who were mentally challenged. My healthy, smart, beautiful baby boy!

But I did what you've done, what I know you will continue to do...I championed and fought for him like a mother lioness...just like you do for your son.

I too thought many times, why me, it's not fair, it's hopeless, is this how the rest of my life is going to be? And I would cry and scream into my pillow at night and feel so alone.

My friend, I know how you feel and I know that you will never give up fighting for your baby boy and that you will find the answers. But don't feel bad for feeling sorry for yourself and for thinking about yourself, you're only human. Tomorrow you will pick yourself up, and dust yourself off and there is always hope dear Kathryn.

You're right people, including myself, don't know what to say. What do you say? The truth, as you said it. This is forever and forever is a long time and it would be nice to just go home, pull the covers over your face and call it a night. To feel 'normal' again. To try and help your son in any way possible and not feel guilty that he doesn't get it or that you don't get it.

It takes a lot of strength to live the life you live and go on about it with thoughts of your son's well being always in the front of your mind. To try and live a 'normal' life and still come home knowing there's nothing normal about it. But what is normal really, it's what we make of it.

I'm so sorry about what happened with your son. Sometimes I wonder why certain people are in the field of work that they're in if only to hate it or makes those around them miserable. As a mother all you want to do is protect him and know that you can't always protect him.

Try hard to protect yourself too from the guilt, the feeling of less and the feeling that your life is 'normal' for what you make of it, what you have and the thoughts you choose to believe in.

What a shocking incident. Hopefully 'they' can get to the reason why he's acting out violently now when he hasn't done so in the past. Yeah, it seems pointless to lay charges against a person that is in treatment for autism.

As others have noted, Kathryn, give yourself a break. Even if only for half a day.

We're all behind you 100% and you can bend my ear if you ever want someone to talk to.

Kathryn!I am so happy to hear from you again even though it wasnt a very happy post. But we can all make it happy with hope, right?

You and your son are in my prayers, always.

Thanks for sharing this story with us. A little boy I babysit was diagnosed with autism at 3. It's been a year and I love him to death.

I know that babysitting him once a week is different than a mother spending every day with his son, but I do get it. It's hard. I mean, I have him for 3 hours a week and I'm exhausted at the end. I'm sorry for what you're going through, but the grass is always greener. You and your son are in my prayers. Shelbywww.comeallcomewrite.blogspot.com

I'm so sorry about everything that's happening, but you're strong, I know you can get through this. Don't lose hope Kathryn; I can't say I know what you're going through, but if it helps in any small way, know that my thoughts are with you.

Hard to know what to say. I agree with others that you shouldn't be hard on yourself. The bottom line is that your son is very lucky to have you. Don't lose that perspective. And take care of yourself, too.

I cannot pretend to understand what you are going through. However, I have a few friends with "special needs" children, ranging from autism to brain stem tumors. It is a horrible task to take on, and it IS a full time job. Each one of my friends have gone through the cycle of needing time for themselves, and then feeling completely guilty over wanting such time.

It sounds to me that the facility that was suppose to help him is really not prepared to actually handle him. I am appauled that they are "pressing charges". They should know the risks when working in a facility such as that, and be prepared to accept the occassional consequence of such a job.

Have you considered seeing if you could be given "caregiver" status. Then you could be paid to take care of your son. One of my friends was able to do that, and while it didn't pay a ton, it helped alleviate some of the financial troubles of her not working at all.

I have no idea what it's like to live with autism, but do I know what it feels like to only want to sleep, to hate waking up, to want to be alone, feel alone and hate being alone. Perhaps you won't consider this an upside, but I don't feel like that anymore. There are people just like you, who feel just like you. Based on personal experience, I can guarantee that you aren't alone. It feels like you're turning in circles, but you are moving forward. You are. And from what I can see, you have no reason to feel ashamed of guilty. I don't really know you, but you sound like a good mom. It just so happens that you need help. There's no shame in needing help and there's certainly no shame in feeling overwhelmed. You're dealing with a lot of really difficult stuff. Hate to tell you, but I think you are normal. You can do this. And if you feel like you can't, you have plenty of people here more than willing to listen... or read. You know what I mean. If it makes you feel better at all, doctors are idiots and the person pressing charges is a moron.

I'm so sorry, I can't imagine going through something so difficult. You are doing all that you can do and that's more than enough (even though it doesn't feel like it), and you can't put all the responsibility on your own head. It will get better (try to make that your mantra). Your son is very lucky to have you and I'm certain he knows that. Keep your head up. My thoughts and prayers will be with you, your family, and your son. (it will get better)

I can't imagine what you're going through, and I don't have anything particularly smart to say, but I just wanted you to know that there is always hope and love and peace :) There's someone who loves you like crazy and you're never alone.

Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let you hearts be troubled and do not be afraid. - Jesus (John 15:27)

Right now I am writing an article about the superpower I would want. I don't really want a superpower for me. I want one for my son, I want him to be able to control his emotions in a socially acceptable way so I can leave the house and not worry about what will happen. So I know he won't beat the shit out of his brother and sister in the parking lot because one of them got in the car first.

If I figure out how to get that superpower, I will let you know. For now, hang in there. Know that you aren't alone.

Oh Sweetie, my heart is breaking for you. I can't imagine how hard this is, and to do it alone. Poor boy, and to have the people you've entrusted him to, lie about him. I just don't know what to say. Sending all my good mojo a safe, happy place to be, for both of you.

Kathryn-(((HUGS)))-I am so sorry you have to deal with stupidity when you have enough to worry about. Of course he is going to act out! He is scared & in an unfamiliar place with people who don't know him like you do. I don't have any answers for you, but know that I will be praying for you & your family. Love ya! Collette

I'm sending you hugs from afar. I'm so sorry that this has happened to you and your son, and I'm sorry that you both have to deal with a world that doesn't understand autism. You are a wonderful, strong, loving mother and I wish you and your family all the best.

Hang in there lady your doing a great job!! Your being a mom and you know your son better than anyone!! My son is border line ADD and like another mother said had isseus in school. I can remember in Kindgarden he punched a teachers aid in the face for going after him under a table. I got called in and asked.. Why did she go after him. He is 5 let him hide under the table. I should have known then that this would have been an uphill battle. All threw school we had issues. I say if I could home school I would. They feel to many kids fit into these boxes we have made!! This includes anything. We are all different people so why are you trying to stuff us all into the same box!!If the staff at the place took the time to get to know your son or how about talking to you , they would have known what set it off, but guess what.. We all have bad days don't we? So maybe he was having a bad day or maybe he couldn't tell someone what was going on with him. It is tough because there is so much wrong with our system and we cant really do things on our own because of the way this world runs.

Do you have a autism group around you that you might be able to get some support from?

Oh Kathryn, I'm so sorry about all this. And yes, how can those of us who haven't experienced what you are experiencing say anything much at all except that we think you're an amazing mother and that we send our love and hugs and hope and support? But that we all will do for you in spades.

Second - as a sister and co-guardian of an autistic adult, I feel your frustration and anxiety. My brother recently ate a pack of hot dogs and raw bacon while on a community outing to Target...we're reaching out to the store, but he may not be able to return.

Know that you are not alone...that your story will help many others face the challenges and work through them.

Kathryn- I have friends with autistic children, they are tired also.I spend time with them and sometimes I wish for them to escape too. The autistic meltdowns are 100- 1000 a day without filter or acknowlegment of your state of mind. I think my friends are the strongest people on Earth. I wish the best for you and hope you find someone who will take care of you too when you have your meltdowns. You are OK. You are normal. I think you are amazing and never regret doing the best you are able to do!

Why didn't you call me?! You know I am more than happy to listen when things are going on with Kevin. If I were going through this with CJ I would know that you would be there for me if I needed to talk. You know I can't give you answers, but god knows, I understand.

Don't feel guilty about your thoughts of escaping the situation you are human after all and sadly we live in a very unfair world - at the end of the day you give what you can give and I suspect in your case that is far more than you should. Humans are very resilient and we adjust our selves to be able to cope with situations. You could have walked away from your son when he was much younger and got on with your life but you didn’t and remember for all the pain and difficulties that comes with your son there is a lot of joy and fun as well. Hang onto the good times and remember we all need time for ourselves to be able to continue to function so never feel guilty about that….

My grandson has autism and I had to go through the anguish with my son of trying to understand why he wasn't talking or reading or.... He has Autism and where it came from we don't know and we still are trying to cope with what it means.

You have done everything right. Now you have encountered a set back, probably one of many...and you are feeling helpless. But I know you will move forward and help your son move forward. You know better than I that his perceptions are different, and may be even better than ours. Keep pouring out your love and understanding. You are his rock -- his base. Continue to always seek treatment and training and advice...but always be his rock.

i am sorry your going through all this. let me say on behalf of other mentaly ill people that you are a wonderful mother to have raised a son with such problems. you are wonderful because you love him and are fighting for everything its worth for his well being.your son may not understand alot of things as is the same with people like myself but i know deep down he loves you and apreciates all you do for him.god bless you

HUGS! We are on the same Plane, same flight--just a different row and seat! It's comforting to know you are there--and I would do anything I could to help you or just make you smile a teeny bit! Even though this doesn't seem to be the time for smiling!

Climb2Nowhere: Wow. This is such a beautiful comment, sweetie. I hope your cousin realizes that you have a wonderful insight into her son's world...'cause you obviously do. I'm trying to hang in there...and the comments here have certainly helped tremendously. Still, as much as I love my full-time job, I miss the freedom to blog during the day! Please know I'm thinking of you and hope to visit soon!

Cathy Webster (Olliffe): Wow. Can I just say that there's nothing better than receiving thoughtful comments from people who are so talented at conveying a thought?? It's really awe-inspiring...and there's no doubt how genuine your wishes are. I thank you for that, sweetie. And I hope things will return to "normal" (whatever the hell that is) sooner rather than later. Here's hoping...

Don't know how I got here to your blog. I'm sorry about your son. I understand about the throwing up. I lost one son in a fire the same month my mom died, and the other (18) has tourettes. Each has cost me a wife. The thing is to process and then keep moving. I'm glad he is still alive.

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welcome!

I'm glad you stopped by. Now that you're here, I hope you'll breathe and reboot. Cocktails are optional, but highly recommended. Not that you need one to find me utterly charming...but it couldn't hurt.So pour yourself a glass of Cloudy, raise it high and send a toast to all of us. I'll try my best to make you smile. But if I fail, just pour yourself another...it's a win/win.